Mast Cell Madness.

I’m officially terrified by my mast cells because Christmas heralded another sick, sick few days. Almost as sick as Thanksgiving, so I’d have to say the 2nd sickest night of my life. However, this time, it all started with my tongue swelling up, which gave me more insight into the mechanism behind it.

I sometimes wonder if all my health issues stem from mast cell activation syndrome. I can tell the difference between ME symptoms and mast cell reactions, but, still, there’s this little seed in my brain that says, what if they’re at the root of EVERYTHING and I should be spending my time finding a doctor with MCAD expertise on this side of the country (it doesn’t seem to exist in Seattle)? I don’t do this because I am generally stable. On a day-to-day basis, I’m not having reactions — unless, of course, many of my chronic symptoms have mast cell degranulation at their core and I just don’t realise it.

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My health issues started with full-blown anaphylaxis, out of the blue, 9 days after my 28th birthday. Doctors were hopeless and gave no advice back then, not even daily preventative antihistamines. The common denominator was alcohol (but not every time I drank, so it was confusing), so, after the last trip to the emergency room in Dublin, where I almost died, I finally quit drinking and haven’t touched a drop in 13 years.

Before that, I had swelling in my eyes and hands and a severe edema episode once or twice that I didn’t really think much about. I linked it to Asian food, so stopped eating that and MSG and didn’t look any further into it. This was eventually diagnosed as autoimmune urticaria and angioedema and I was told to take Zyrtec, but didn’t want to medicate daily for an intermittent condition.

I’ve always had trouble with my periods — crippling dysmenorrhea — but they got progressively worse until I collapsed with syncope and shock 13 days after my 32nd birthday and was taken off in the ambulance. For 6 years, no doctor gave me any advice until, finally, an OBGYN told me to dump salt on my tongue. This doesn’t stop the collapses, but it certainly helps. These episodes continue to happen randomly to this day, always on the first day of my period and are, without a doubt, mast cell mediated, presumably low-grade anaphylaxis (very low blood pressure and pulse, bowel problems, syncope, shortness of breath).

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I have a spot in my throat that has itched for years. It was actually the thing that lead to diagnosis of my toxic thyroid goiters and Grave’s Disease because I mentioned the itch to some random doctor who palpated my throat. I’ve now realised it signals reactivity in my body at a very low level. It’s almost always there, but, when it’s not or when it’s very bad, I pay attention.

I was flushing badly for years, thinking I had developed bizarre self-consciousness, but the self-consciousness was actually a result from flushing and having people point it out! When I was diagnosed with Grave’s, I thought it was a symptom of that, but it never went away after ablation.

Of course, in retrospect, there have always been issues I have dealt with, which may or may not originate with mast cells: thyroid problems and Raynaud’s can be a result of mast cell disorders. Also, constipation, headaches, low blood pressure, and temperature sensitivity (all of which got much worse in recent years). Finally, many of my ME symptoms could also be from MCAS: fatigue, joint and tissue pain, eye pain, vision problems, vertigo, episodes of low body temperature, scent/odour/chemical sensitivity, sinus problems, cognitive impairment, hair loss, decreased bone density (I have osteopenia, on the cusp of osteoporosis), shortness of breath, medication reactions, malabsorption, and tinnitus. See a list of signs and symptoms here.

It would be wonderful to be able to manage and control any of these issues, but none of them scares me like the nights I’ve had recently, not even full-blown anaphylaxis. I’ve tried so hard to figure out my triggers, but they are moving targets. Tongue swelling and angioedema are obvious, as is the very specific breathing difficulty you get with anaphylaxis (it is nothing like asthma or wheezing from an infection). I don’t get daily hives and itching like many people. My reactions now are all about the histamine bucket and completely dependent on where I am in my cycle and what is happening in my life. I may be able to eat anything one week and then suspect that those same foods are giving me sinus trouble, insomnia and a jaw ache a different week. My chronic daily headaches, tinnitus, brain fog and exhaustion could be from food choices, but I’ve never been able to pin down any causation. My diet is very low-histamine compared to normal people and how it used to be, but I still allow myself chocolate, coconut, store-bought chips, beef, almost all fruit, including dried and many things that others avoid. Could these things be contributing to my problems? Yes, but, without a definite correlation, I don’t want to eliminate foods. Once you’ve experienced anaphylaxis, “reactions” like a runny nose, constipation or aching hands are quite ignorable. The only thing that consistently caused a reaction was alcohol and my periods. And, now I can say with certainty, holidays and events, no matter how careful I am.

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I prepared for Christmas over the course of a month and a half, slowly bought presents and wrapped them, slowly wrote some Christmas cards, slowly got the spare room ready for my sister, slowly did laundry — over the course of weeks! Didn’t overexert myself at all. There was no excitement, no activities. My sister and her small dog came over, we watched tv and opened presents. I had rested multiple times throughout the day and the only not normal thing I ate was half a tiny piece of fresh King salmon, which had been brought in off the docks that same morning and, I was told, caught the day before.

My tongue started to swell up after dinner. By the late evening, I had gotten upset for really no good reason (which has historically happened with my mast cell reactions) and was flushing. I had a bad reaction to about 15mg of Benadryl a week or two prior, so I was scared to take a decent dose on this night. I bit a dye-free capsule and put a drop on my swollen tongue and went to bed. At 2am, I awoke with the same evil that I experienced on Thanksgiving and the night after starting Cromolyn (before going to the AirBnb rentals back in September — it was a few days before my period that time, too). I was shaking so badly, I couldn’t lift the water glass, I was drenched in sweat and had weird runaway chills coursing through my body. I crawled on my hands and knees to the bathroom, which scared the shit out of me because, through all the worst of ME, that’s only happened once before. I fell into harrowing nightmares and woke up gasping for breath over and over, feeling poisoned and infected. I dreamt that I was sick and dying and my husband wasn’t paying attention or taking it seriously. I dreamt that I was sick and dying and my mother laughed at me (this isn’t remotely based in truth, this is my terrified mind not knowing how or where to get help). I dreamt that my dog’s neck was broken and I was carrying him to get help, but I was sick and dying and couldn’t do it. And, finally, I dreamt that I was lying on the floor begging my husband over and over: “Please kill me. Please kill me. Please kill me.” I woke up sobbing and so wrung out.

That morning, my period came 5 days early. You better believe, if I had known my period was going to arrive Christmas Day, I might have cancelled Christmas. Or at least postponed present opening for a day. And definitely not eaten even the freshest salmon.

In the past, my anaphylaxis episodes went like this:
My friend A’s birthday party.
My friend C’s birthday party.
Oktoberfest.
Easter party.
C used to joke that I was allergic to fun. I can’t believe he was right. I collapsed and had the paramedics called twice while my mother was staying with us and, also, when my best friend was here from Ireland — both were “events”. I started to get paranoid that, psychologically, I was somehow causing my system to crash when there were visitors. But, every single one of these times, I had my period. There were only a few anaphylactic episodes that I can remember when it wasn’t the first day of my menstrual cycle. EVENT + MENSTRUATION = MAST CELL MELTDOWN. But I think I only really and truly started to believe this 100% on Christmas.

So, Christmas day is a total haze. I crawled downstairs a few times to eat and try to put on a good face, but I don’t remember much and dozed most of the day. Like Thanksgiving and September, however, I bounced back quicker than I could have ever anticipated. That night I kept marveling, “How am I speaking? How am I sitting up? How am I alive?” When it’s bad, you honestly want to die. When it ebbs, the human spirit kicks back in shockingly quickly and you just get on with it, until the next time when you are surprised anew at just how bad the bad is. I didn’t even really modify my diet. I continued to eat my almond butter, coconut ice cream and drink bone broth and tea (all high-ish histamine). If anything, I felt more, Oh fuck it, how much worse could it be? At this stage, I’m much more scared of menstruation and engaging in any sort of event — even one in my house, in my pajamas, with only a single guest.

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I am currently putting together an informational kit (in a bag that was donated to me by a member of one of my groups), so my husband has something to grab in the event of an emergency. My dilemma is that I’ve managed to avoid drugs all this time (never had to use my EpiPen), so I have no way to premedicate for things like plane flights, dental work or necessary procedures like a CT scan or colonoscopy (which my doctor has wanted me to get for years, but I refuse because I’m worried about reactions). I have no safe protocol. 13 years ago, I got IV diphenhydromine for anaphylaxis, now I react to 15mg of Benadryl! 5 years ago, I had IV morphine for dysmennorhea, now my breathing shuts down with a crumb of hydrocodone or codeine. What would happen in a real emergency? If I need surgery? Knock on wood, toba toba, ptooey, ptooey. Once I have everything compiled, I will post it here.

Having said all that, I’m really in quite a good place, feeling happy and hopeful about the new year. Maybe because I realise that these reactions are mast cell degranulations and not ME relapses and that takes some of the fear away. Somehow dying from anaphylaxis is less scary than becoming permanently bedbound with ME. Perhaps only people with both illnesses will understand that. So, here’s what I did New Year’s Eve:

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As well as resilience, forgiveness, positivity and optimism, I’d also like to request that 2015 doles out truckloads of health, wealth and happiness to all of us. That’s all. That’s not too much to ask, right? 🙂

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June JuJu

I have had a bad backslide this month. It started with headaches in the first week of June, then bowel inflammation and bloating, then weakness, exhaustion and a constant buzzy/numb head… On the 10th, I had one day of terrible pain in all my joints: hips, shoulders, hands, wrists. On the 11th, I had a histamine reaction with my throat spot getting very itchy for the first time in ages, coupled with the internal fire that I call flushing. On the 13th, I had unusally bad blood pooling and swollen hands and feet. On the 14th, I woke up with the worst muscle pain I have had in probably over a year… full-body, every movement hurt, muscles I forgot existed… and it sent me into the emotional doldrums: I can’t do this anymore. What’s it all for? I can’t live like this. My whole life was useless. I never had a family, I never made a difference in the world, I worked and studied and worried for nothing because it was all for nothing and useless and life is meaningless blah blah blah… That was brought on by seeing an old friend’s holiday photos of beautiful people gallivanting in the sun with their beautiful children and their happy, youthful I-haven’t-aged-a-bit-in-the-last-23-years smiles. One should never look at Facebook when they are bedbound in extreme pain and it’s summer.

On the 15th, I realised the deadline for Social Security to receive my disability paperwork (work history and function report) was the next day and I panicked. I’d read the letter wrong and thought I had another week. It should have taken a week to do, but I had to cram it into 24 hours. They write on the form that it should take about an hour to fill out, which is hysterical. It took me about 10 solid hours. I had to research the jobs I had and how much I was paid back to 1997! I had to describe every position I held. I had to estimate things like how many hours a day I stooped, bent, knelt, sat, walked etc. For each position! Seriously? How many hours a day I bent?? For fuck’s sake. For all my restaurant jobs, it was fairly easy: I walked all day, every day. But, they wanted to know things like how many hours a day and days a week I worked. Well, some weeks it was 3 shifts, 10 hours a day and some days it was 14 hours a day and 7 days a week (when we were opening restaurants). I was that person who was writing in tiny letters in the margins, giving explanations and qualifiers that will never be read. They’d ask something like, “What did you do all day in this job?” and give me one line to answer. What didn’t I do all day? That would have been easier to answer. As COO, I did everything. They wanted to know how heavy objects were that I lifted: “What was the heaviest object you lifted? How much did the objects that you lifted most of the day weigh?” I wound up texting my friend from my old job: “How heavy do you think 3 of those dinner plates loaded with food were?” We were blessed with the heaviest plates in the industry and the heaviest food. Tex-Mex doesn’t leave any blank room on the plate.

For the function report, they asked the same questions different ways for 12 pages. Maybe they wouldn’t be the same answers with other illnesses, but with this one they are: “How has your social life been affected?” “How have your cooking habits changed?” “What household chores can you do?” “How have your hobbies and past times changed?” “What can’t you do now that you used to be able to do?” Over and over: I can’t do any of it anymore. All of it has changed. I was excited when I got to the question about dressing myself: Yes! Yes, I can do that!

So, the 15th and 16th turned into the familiar nightmarish feeling of deadlines and all-nighters. Oh, how many times did I leave all my assignments and studying to the last minute in college. It was my M.O. Always was, even in secondary school. I stayed up all night studying for my leaving cert (the final exam at the end of high school in Ireland) maths exam and then took a nap in the early hours of the morning and slept through it! (Side note to any young ones reading this: I thought the world was going to end. I was a perfectionist even then and, when they wouldn’t let me retake my exam, I thought my future was lost… I’d never get into the colleges I wanted to attend… it would be a black scar on my record for evermore… But, guess what, it made no difference in my life. You’ll be ok, no matter what the outcome of the leaving or the SATs or any of it. Life is much, much more.)

I put ear plugs in and sat secluded for hours upon hours trying to fill out the paperwork. My brain wasn’t working and I had to get my husband to help (“What symptoms do I have, honey?” “What hobbies do — did — I like to do?”). My hand was cramping and my vision was pretty much gone, so I went to bed and finished it the next day in a complete stupour of pain and nausea and bricked-ness. The SSA said that it was okay that it was late. I called 3 times to verify that and they kept saying it’ll be fine, so fingers crossed I didn’t screw myself.

On the 17th, I awoke in the middle of the night with an evil migraine, which is still lingering today. I have been chilled and achy and wired the last few days, trying to figure out if it is something I ate that caused the joint pain, muscle pain and migraine — is it because of all the histamine foods I have been adding in? — or is it just the unrelenting disease and the stress and overworked brain? Last night, I couldn’t get to sleep until 1am and I awoke at 5am with my heart galloping from a nightmare. I’ve been wide awake with my brain on fire ever since. Can’t deep breathe or meditate, can’t concentrate or be productive, can’t jump out of bed and tackle the day. Just have to lie here, my body a bee hive of activity and my eyes barely able to focus.

Chronic illness gods, I’m sorry I mentioned that something was working. How dare I?! Please give me some respite. I’ll be good.